Parkinson's Disease Tulip


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Old 03-21-2013, 02:23 PM #11
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Default that's the point of the survey

Quote:
Originally Posted by moondaughter View Post
Dear Debi,

This forum embodies some very intelligent people who are self-regulating.

My "primary care provider" for me is****me***. My present support team includes massage therapists, a dentist,music therapist/shaman, an upper cervical chiropractor, a naturopath,and friends....no neuro ,no MDS, or even MD.

Would you consider broadening your survey to include the massive pder population who are seeking complimentary and integrative therapies ? This would engender a very broad range of questions that I'm wondering if you would find "relevant".

your survey question #2: - "What does your doctor ask you during every visit?" my doctor (me) asks (me)..........where does the fear come from?(not that the answer to that is a solution to the problem)

Kind regards,
Sharilyn

Moondaughter - if those are your answers to those questions, then fill in the survey that way! That's the point of the survey -- it's written in a way to capture all kinds of experiences. MJFF wants to know it all!

This should not be a point of contention - it should be a point of inclusion, transparency, and information gathering.

Cheers
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Old 03-21-2013, 04:24 PM #12
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Default inclusion is the point!

Quote:
Originally Posted by indigogo View Post
Moondaughter - if those are your answers to those questions, then fill in the survey that way! That's the point of the survey -- it's written in a way to capture all kinds of experiences. MJFF wants to know it all!

This should not be a point of contention - it should be a point of inclusion, transparency, and information gathering.

Cheers

Yes I agree these questions are very open ended. They are also prefaced with " We are working to better understand the nature of information exchanged between patients and doctors regarding family medical history, risk factors, symptoms and medications."

Perhaps I made some wrong assumptions but typically the orientation of neuros, MDs, MDS is more about drug management whereas integrative therapies encompass a VAST spectrum of health maintenance.... To answer these questions relative to my therapists would take all day...and I'm just wondering if the answers would be of interest - one visit to any of my therapists takes more time than 4 visits to a neuro. Also I'm wondering if the survey would count licensed therapists as "doctors".

I apologize for any affront. None intended.
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Old 03-21-2013, 06:00 PM #13
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Default more information

Just a little update on our survey. I’d like to thank everyone who has responded so far. We’re up to 24, and everyone has been thoughtful and detailed in their answers. We appreciate this very much, and these perspectives are extremely helpful.

There is a lot of commonality in people’s experiences, especially in how they prepare for their appointments and come ready with questions for their doctor. There are also some striking differences around how engaged doctors are with their patients during appointments … some seem interested in how PD effects every phase of a person’s life while other seem more dismissive.

In terms of our interest in questions that go beyond the patient / physician relationship... yes of course. We know we have much to learn from patients.

This survey is informal and is helping us with a particular element of a project where we how to collect data from patients for research. Our narrow interest in the doctor visits revolves around our hope to design "one pagers" that summarize collected data that patients can print and share with their docs at visits. We are trying to understand from all perspectives what kind of dialogue is taking place in that setting with a mind toward assuring that a one-pager is in sync / useful.

Again, the primary focus of our project is data collection for research but we assume patients who contribute data may want to "share" it with their physicians so we are inquiring via this survey about that particular interaction. The questions in this survey aren't indicative of all the questions we intend our tool to monitor/report on.

So, for those of you who work with physicians, your input is useful for this particular part of our project. If you haven’t taken this survey, I encourage you to do so. Again, our intention is to be better informed about how doctors and patients interact and communicate. Your answers are anonymous and will help guide some of our current efforts.

Thanks again

Debi
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Old 03-28-2013, 12:41 PM #14
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Just filled it out! Bump.
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Old 03-30-2013, 09:19 AM #15
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I did the survey...but they won't like it . I am afraid doctors are not very interested in a natural approach...they are controlled by the drug companies.
..if only we could get back to sweet country doctors like the one on Little House on the Prairie who knows his community ...there when they are born or die....and loves them enough to take eggs for payment if that is all they have to give.
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